NHS Continuing Care – and the story of Peter and Arthur…

Every family is likely to be affected by long term care matters at some point, and it’s vital to be as informed as possible about what should (and shouldn’t) happen at the point where an elderly relative needs full time care – and what to do if things go wrong.

We’ve highlighted some of the issues using two fictional people as examples, and we’ve used a hospital setting as the context, because the same principles can be applied to someone still at home and needing full time care…

Peter, aged 52

…has just fallen off a ladder doing DIY at home, and he’s badly broken his leg. He’s taken to hospital where he’s admitted, and he undergoes surgery to pin his leg. He then remains in hospital until he is fit to leave. In the meantime he starts some rehab therapy and has ongoing treatment to heal the bones and the soft tissue damage.

Peter lives on his own, and it’s going to take some time for him to get mobile again and be safe at home. Once he’s out of hospital though, he can access the key healthcare services he needs such as his GP, a nurse at the surgery, a visiting district nurse and physiotherapy. Plus he can claim certain state benefits to help him through this time, as he cannot work.

Does he have to pay for any of this? Absolutely not. Healthcare and nursing care is free in the UK, and this is clearly set out in law.

Arthur, aged 79…

… is frail and has a bad fall at home and breaks his pelvis. He also has other chronic health problems that require access to medical/healthcare services. He’s taken to hospital where he’s admitted and he undergoes surgery, just like Peter. He then remains in hospital. His overall health needs are greater than Peter’s.

However, unlike Peter, Arthur quickly comes under considerable pressure to vacate the bed before he’s fit to leave, and in the meantime he is not offered any beneficial rehab therapy. Arthur lives on his own, and it’s going to take some time for him to get mobile again and be safe. The discharge team at the hospital continue their pressure to get him out, and they tell his daughter to find a care home for him. No one seems interested in the obvious signs that Arthur is deteriorating needlessly in hospital because of avoidable dehydration, malnutrition and lack of beneficial movement. Instead the hospital team ask how much money Arthur has, and whether he owns his own house. At no point was Peter asked these questions or put under such pressure to leave. The hospital does not seem interested in Arthur’s chronic disease.

Misinformation about paying for care

Arthur’s daughter (who is also his power of attorney) is understandably upset and stressed about what’s happening to her father. Her knowledge of the care system, based on what she hears on TV and in the press, and based on what other families say, is that when someone goes into a care home, they have to pay – and no one at the hospital has suggested anything to the contrary.

She knows her father can’t go home at this point and, because she wants him to be safe and can see he’s not being cared for appropriately in hospital, she agrees to find a care home. She succumbs to Social Service’s insistence on having evidence of Arthur’s financial situation, and she agrees to start paying for care in a care home.

Now that the hospital can effectively close their current files on Arthur, his daughter is even less likely to be given any accurate information about care fees and care funding. Arthur will simply continue to pay for what is, in his case, essentially healthcare and nursing care.

Access to NHS services in a care home

Once he’s in the care home, Arthur cannot easily access the key NHS healthcare services in the same way that Peter could – it’s harder to see a GP that actually knows him, he can no longer see a nurse at his local surgery and he will now also almost certainly be told to pay for physiotherapy. The care home will be in charge of this, deciding what he will have and when he might get to see a GP.

There may of course be nursing care provided in the care home. Is he charged for this? Yes.

For Arthur, healthcare and nursing care is no longer free (aside from a small weekly nursing benefit (Funded Nursing Care) that is paid directly to the care home, not to Arthur – but that doesn’t stretch nearly enough to cover the actual cost of his nursing care). Also, it seems increasingly likely that care home residents may have to pay to see a GP – and yet Peter doesn’t have to pay.

So what happened to the free healthcare that everyone else is entitled to?

Peter didn’t need full time care and yet Arthur does – so it perhaps it’s for this reason that Arthur’s finds himself in this situation. But Arthur has greater healthcare needs than Peter. And if care homes didn’t exist, Arthur would be in hospital receiving care provided free of charge by the NHS.

So what’s the difference between Peter and Arthur? One thing: their age.

When you get older and need care, one thing is absolutely guaranteed: You will be asked how much money you have before you’re asked anything else.

Arthur will now lose his savings, his home and everything he’s worked for to pay for care that should arguably be provided by the NHS. Indeed, in law, he should not be asked about his money before the NHS and local authority have looked properly at his care needs FIRST.

So on what basis should the NHS pay for care?

Let’s continue the story…

Arthur’s daughter continues to visit her father and manage the payments to the care home. She puts her father’s house up for sale, and gradually realises that very soon everything will be gone. She also knows that the proposed caps on care fees (due to come into effect in 2020) will actually make little difference to her father.

And because Arthur is ‘self-funding’ (the ridiculous phrase used to describe someone forced to pay for care), no one in the local authority or the NHS is likely to be proactive in helping his daughter, because they have closed their files. She’s on her own trying to figure out what’s right and what’s not.

After doing some digging, she later finds out that an initial Checklist assessment for Continuing Care funding was in fact done at the hospital, but that she was kept out of the loop and the assessor simply rendered her father ‘ineligible’ for funding.

As her father’s power of attorney she should have been fully involved in the assessment and should have had the opportunity to give the assessor full information about her father’s health and care needs. In addition, the local authority’s (Social Services) primary focus should have been to assess care needs, not Arthur’s money. The local authority could now be in an illegal position.

Arthur’s daughter is now realising just how much incorrect information about care fees she’s been given by the various health and social care authorities, and that no one seems to be on her side.

Getting reassessed for NHS Continuing Healthcare

So now she also faces the battle of getting her father properly assessed for NHS Continuing Healthcare funding, making a retrospective claim to get back care fees he’s already paid and arguing at every turn with assessors – who are the same people who hold the purse strings.

This will be time-consuming, things will probably not be done correctly, the assessors may be unfamiliar with her father’s needs and with the legal framework in within which assessments must be carried out, and the care home may not be helpful as they will receive less money per week from the NHS should Arthur secure funding.

Plus, Arthur’s daughter will now incur her own significant time costs and expenses on her father’s behalf in a bid to get things done properly, and if she wants to get those costs back she will probably have to take legal action.

It’s an appalling situation.

And yet this is what happens every single day to families in the UK when an older relative needs full time care.

Social Services are usually the first point of contact that a family has with the health and care authorities. But Social Services are part of the local authority or local council… and local authority care is means tested. And so the problems start right at the outset.

24 Comments

My mum has dementia since 2013 she fell at home 9 weeks ago breaking her right hip, fracturing top right arm, dislocating shoulder and multiple fractures to her face. Hip was operated on and she was transferred 2 weeks later to a rehab ward at my local hospital. She was transferred with catheter and staff removed after 2 weeks and an infection. They put pads on her so I asked if they could try bladder rehab. Reluctantly they agreed but said they’d leave pads on at night. Mum could not weight bare on arm on a Zimmer for 6 weeks (consultant instruction) so was transferring with two people hand held assistance. She was allowed to weight bare on 15th Oct and was using Zimmer with 2 people. After 2 days OT said to me I don’t know if there is much more we can do with your mum because she doesn’t take instruction well. She goes too quick and is not safe. I’ve been told her right leg slightly shorter now and been asked to buy shoes so they can build up but I’ve told them my mum will not understand she needs to wear shoes in house. When you ask her she says no slippers are indoors only so my worry is she will walk bare foot in house and over balance. I had meeting with ward SW last week and I asked about Continuing Healthcare (CHC) Checklist. I was told she won’t get it. They already know she’s full cost because I had a previous care package just for 2 medication calls a day. I asked if she could have a Checklist assessment and SW said ok. I went in yesterday and SW handed me a document and said here’s the CHC ‘negative’ checklist. I asked why it had been done without me and she said oh the CHC nurse has done it you only go to next stage if it passes. Is this right? I have read it and disagree with some of the gradings especially the cognitive and behavior. There was a slip with her number on so I’ve left a message but I want to know if I’m right in asking why I wasn’t present for checklist assessment.
Unfortunately I had a terrible time in 2015 with my dad being abused and neglected in a care home whilst on respite. Had police investigation, CQC Safeguarding the lot so my trust is not good in relation to care outside of her home now.

My husband is in care home having been transferred from hospital. He has had assessments and told he will get £155 a week nursing care. Home is £1300 a week. I appealed as he has Alzheimers and Vascular Dementia plus Parkinsons and is immobile etc. They also said seizures were not unpredictable. Their excuse was he couldn’t take the tablets and had to have them liquid. If I carry on with the appeal I will need an advocate to help. Then should I win would have to pay thousands for the privilege only to have an assessment 3 months later and be refused again. Really don’t know what to do.

In spite of all the articles here, inspiring anger at the outrageous system which targets anyone over 75 it seems, broadly speaking, there seems to be hardly anyone reporting that after doing all this endless paperwork challenge, that they actually win their funding….a local acquaintance failed to get the NHS to pay anything more than 2 months, after years of battle with lawyers. This put me right off, as it seems to me that any lengthy challenge is a waste of time and only adds to the already impossibly stress already on the family. However illegal, the NHS has no intention of paying for anyone, least of all now, and whether you do all this paper waiting, delay tactic challenging, research, lawyers, letter writing, the NHS will make sure you never get it one way or another. My mother remains in her expensive nursing home, after a massive stroke, bedbound, but seemingly stable, and with every assessment, she is marked as not eligible. She can do nothing much for herself, but has fairly predictable behaviour. Lacks capacity. it’s awful. But with the state out to plunder their estates, the family are on a major loser. If it doesn’t kill your parent, it will kill you fighting the state/NHS. Has anyone actually won care for anymore than 2-3 months and not just for aggressive dementia/behaviour, but for other conditions such as strokes and bedbound cases?

VW – we hear every week from families who have secured Continuing Healthcare funding. It has certainly become harder to get, particularly since the NHS ‘reforms’ of 2013, and many families do find they have to fight to keep hold of the funding once it has been awarded. However, not all people have the funding taken away; some do indeed keep hold of it.

My mum is still in hospital, she has been given CHC and is due to go into a care home this week, (she was in another care home, but was neglected and abused, hence why she is in hospital, and has been for seven weeks).
But we have been told that we have to pay £154.00 per week towards the care, and mum also has to pay £105 per week, which she doesn’t get, so I was informed to contact the pension credit, to make up her share.
Surely this cannot be right ?

You’re right, Karen – that’s not correct. CHC cannot be topped up; it is only local authority care that may attract top ups. It’s illegal for the NHS to ask for payment for CHC care. This is clear in the National Framework – I think it’s around page 117.

I am just starting to get my head around all this care system. My mum permanently now is a resident in a care home. I only recently became aware of the Continuing Care NHS (free) which obviously begins a long process with the initial Checklist etc. I applied for this through the care home some 4-5 months ago. We got a letter to say the Checklist has been approved and they will eventually assess mum but they are over stretched with the workload. I understand this should be done within 28 days of applying. We are still waiting!!

Within a few days of mum being taken away I was getting telephone calls from the local social care department as to enquiring of her financial situation. A week after mum was taken away a social worker visited and my father was forced to fill in a financial assessment form. We were all new to this behaviour and duly complied. Mum was housed in an intermediary hospital before eventually being put into a care home. I understand from the care home that mum was only assessed medically just a matter of days before being admitted.

Due to the social worker insisting my father “tell all financially” to her just 8 days after mum was taken away under the mental health act, were department of health guidelines broken ? Was this action illegal what this social worker did?

I’m obviously going to have to see a Solicitor very soon. My mother never made a Will nor did she make any legal document. I feel isolated in such a confusing situation. What’s more this whole situation takes up so much precious time.

Yes, you’re correct Margaret. It should be completed and a funding decision made within 28 days. The social worker had no business asking about money when no decision had been made about who is actually responsible for funding. The local authority may now have put itself in an illegal position by means testing – when the care needs are potentially beyond the local authority’s legal remit. This may help explain further: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/

I was called into a meeting about my husband’s discharge on 22 December. I asked for a Parkinson’s nurse to be part of the team but when we met it was me, my husband, nurse, stand in social worker, OT and physio. The general assumption by the team was that he needed full time care. I have not been consulted or shown the CHC assessment and my husband does not remember doing it. I asked about him coming home but was told because of his anxiety and Parkinsons and dementia that he couldn’t manage at home when I am working. I am 17 years younger than my husband (one of the other painful things is that nurses who don’t know our relationship say ‘Thank god you are here, your husband’s been so anxious.’ They say because we have a property and a property in Ireland which I run as a business that I am not eligible for any funding and that they will take a deferred payment over the house in Ireland. I was told this would be free to set up and run. Today the paperwork has arrived it costs £750 to set up and then 2.65%. Both houses are in joint names. On 23 Dec I was told that I should spend Christmas Eve and Christmas Day going round homes because they would all be open. I am on my own with only the support of my elderly parents of 84 and 91. I feel I am being bullied and railroaded. I am trying to protect my future the house in Ireland was bought to provide retirement income. I’m quite a strong person but nearly broken by this. I believe the hosptial and social service are in breech of their own guidelines. Can I insist on seeing the CHC report?

Yes, you can insist on seeing the assessment notes, the assessors’ recommendation and the final decision making rationale. Without these, you don’t know what you are appealing and it’s certainly not acceptable for the CCG to keep those from you. If the CCG can’t produce the assessment notes, it indicates that the assessments may not have been done at all. It is only once a decision has been made – in writing – that the local authority should even think of means testing your husband, Louise. Also, keep in mind that it is only your husband’s own money that should ever be means tested and/or his half of any joint monies. Your own money doesn’t come into it at all and should be ignored.

My mum died 2.5 years ago. In the last year of her life she had an assest, being my father’s house when he died. We are being pursued by the Council for a refund of care home fees for this period. She had originally been assessed for CHC after leaving hospital in 2008 and again in 2010, both refused CHC. She was bed bound, doubly incontinent and had unhealed leg ulcers for which she required regular maximum pain control monitored by a nurse. We have instructed a solicitor as the only way forward to get retrospective CHC. We can’t appeal the 2010 CHC as too late but we are looking to refute the Council claim for retrospective care home fees (she was in a nursing home) from 2012 until her death in June 2013, some £23K. After some obstruction getting her care notes and medical records we now realise that she was more ill and in pain than we realised at the time which is upsetting all because a CHC was not done correctly. What social needs? All my mum had was her bed, her relatives and the telly! We found out she had not been out of her bed for the proceeding year except to go to hospital and even then she had to go for routine appointments on a trolley as a wheelchair was too painful.

Hi Jenette,
Yet another harrowing tale. I sincerely hope that the lawyers help get this sorted out. If the procedures used show any sign of illegality, then for a period of time, you have another avenue and that is the courts. The NHS hate courts….. Court judgements engender new law that is sometimes to the NHS and the government’s disadvantage. That is why the CHC process uses quasi legal, Independent Review Panels (IRP) on a case by case basis…… In this way, what I cause to happen and be ruled upon within my mother’s case and appeals, is not made available to you or others. It is a deliberately crooked system.
The result of IRPs is yet another recommendation, that is passed to the CCG involved and even then they can refuse to accept the outcome. All this deliberate and designed in messing about inevitably leads to court, even whilst the National Framework disingenuously states that legal representation is not necessary.

My 90 yr old mum is going into late stages dementia, there is very little she can do for herself now, she is still mobile but quite unsteady on her feet needs to be reminded to eat drink go to the loo etc. She still lives in her own home which she owns. We have a care package that mam funds, we get a small amount from social services, she also goes to day centre and I stay over every night as its not safe otherwise. Mams savings are only going to last another six months, and we are worried how we will manage. If she will be funded to carry on at day centre and if the care package will be met. Her care costs her around £1000 per month but that includes 4 days respite for me and pays for a dog walker couple times a week for mams dog . I’m worried she will be forced into a care home. Where do we stand with continuing care at home? It’s all very worrying. Social services are coming tomorrow to re assess her care needs as they have increased a lot . Anŷ advice will be very much appreciated.
Thank you

Wendy, My mum got CHC funding back in 2010 whilst at home. It was a reduced rate after leaving a nursing home because of recovery after a hospital admission. It continued later in the year when she was readmitted to the home. She was only readmitted due to threats of us “dumping” her at the emergency department, if the NHS tried to involve the council by discontinuing the CHC funding. They did that in any case a few months later and then the constant slog of Independent Review Panels began.

My Mum in law is in similar position – she has dementia, cannot walk to the toilet, is incontinent, needs reminding to eat, had a fall (in her care home which no-one saw happen!?!) and broke her pelvis, spent 3-4 weeks in NHS hospital during which they badgered my husband to get her out to free the bed.
We moved her to a different care home which is eating up all her money very fast. We think she might be able to stay when it runs out over the next year, but not certain.
The continuing health assessment was done at the new nursing home without our knowledge , even tho my husband has power of attorney. They told us the assessment was being done but gave us the wrong time so we missed it – no-one apologised. We felt this was deliberate, but can’t prove anything. Mum was assessed as needing social care, not nursingcare.
The nursinghome has since been downgraded to residential home status and they say any nursing can be done by district nurse. They do seem to be looking after her pretty well as far as we can tell, and when I asked Mum if they were looking after her alright she seemed fairly positive.
But my poor husband feels lost, and doesn’t know how to deal with it all especially the finances and whether Mum should be paying till her money goes.

Hi Wendy – I frequently hear from families that they’re given the wrong assessment time, or the assessment conveniently starts earlier than scheduled or they’re not informed at all that an assessment is taking place, as in your case. It’s maddening. The NHS should do a repeat assessment if you weren’t properly involved, and if you disagree with the outcome of this one or a new one, you can of course appeal.

I wonder if anyone is claiming retrospectively for Continuing Healthcare. My mother died Dec 2007, having been admitted from a one night stay in hospital to a Care Home. The LA clearly stated in the Nurse Assessors NPD that she has severe dementia but states they asked my mother if she would go into the home, to which she apparently agreed but would go back home when she recovered. Doubtful she even had the capacity to understand or respond coherently to this. All I can see is that an Easy Care Assessment was carried out. My eldest sister who actually worked as a senior pharm at the hospital was spoken to by social services and all they said was how did she manage as Mother needed 24/7 care. Sister had moved in for nearly 2 yrs to care for her although she worked full time and there was a care package in place for which we paid. We were asked how that would be funded and ignorantly said well yes we will pay, she has a house and savings. Mother went into care and never left, died 2 yrs later. There is a history from the beginning of aggression, incontinence, failure to feed, all the usual upsetting stuff. The LA visited after one month and saw her and state she was “stable”. Laughable when you read that on a daily basis my Mother hit, spat, kicked, defaecated. the summary given by the Nurse Assessors is poorly written. We now have til 3 June to respond but I’ve extended it to 26 June. My eldest sister will do the comments but I believe the fact there appears to be no assessment for CHC and my sister was not involved, that their arguments if they have any are flawed. I see that there was an MMSE 19/30 but again I do not believe Mother was accompanied at the time. I’ve sent links to your website to my sister in the hope that she will be able to use the salient points in our comments to the draft NPD (draft is not draft though as it then goes to the Panel – which is a closed shop!). If any one has any tips re similar situation I would be so grateful.
Thanks. Don’t usually do this sort of thing but feel strongly about how the elderly with equally painful illnesses (dementia) are ignored.

I can understand and empathise with the points in your comment, Veronica – and, as you say, some of what has been done in the name of ‘assessment’ is laughable. There certainly seem to be a number of flaws in the process.

This is so like my father’s situation. He was discharged from an NHS hospital in Sept 2013, unable to walk, feed, toilet. Has various medical needs on top of this and dementia. Refused a CHC full assessment as sister on ward said he wasn’t eligible and wouldn’t change the ‘scores’ on her original initial assessment even though it was challenged. we were told he was beyond rehabilitation and needed to go into residential care full time. Been fighting ever since. Got full DST assessment by district nurse on 2/1/14 with recommendation for CHC. Still waiting. Panel initially rejected it due to ‘disorganised papers’ and now want some of the domains revisited and comments amended or moved. Now have another meeting next week to sort this out with Social Services and NHS but all I can see is delaying tactics and playing around with scores in order to reject it. In the meantime dad is paying approx £900 every four weeks with a further amount deferred because he owns a property. Am determined to see this through and appeal if necessary but the strain on myself and siblings is unbearable. X

Whatever decisions families need to make about how to manage property and other assets, the first thing that should happen if the person in care has health needs is an NHS Continuing Healthcare assessment. This is only way to know whether they should be paying for their own care or not.

My mother is in a care home and we are paying a monthly amount to the care home until we sell her flat. Just wanted advice if we have to sell the flat for her to pay for her caring costs. She went into this care home in DEcember 2012 and is paying approx £584 per month.
We are just about to put her flat on the market. But some people tell us to rent out the flat to pay for caring costs. just need advice are we doing the right thing. Thanks. Bob Collyer

Yes this is what happens.
Every time my Mum has been admitted to hospital, when they ask you to answer questions, one of the first is “Does she own her own home”
The O/T at a meeting at the Community Hospital also asked the question and then we were asked by Social Services Care Manager, along with how much money she had.
I’ve heard them asking other elderly people as well.
Makes you wonder if any effort is made with Home owners to make sure they get the best care.
13 years ago my Mum had to go into a Care Home, but I managed to bring her home after a year.
I got a call to go to Social Services where the first question asked, again, was “Does she own her home, and bring her savings books.
Disgusting.

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It takes you step-by-step through the whole NHS Continuing Healthcare process, right from the start, including how to approach the NHS, what should (and shouldn’t) happen, the pitfalls to avoid, what to do and say before, during and after an assessment, what’s right and what’s not, how to challenge decisions, how to pull apart the NHS’s assessment notes, etc.

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